MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Sunday, 5 February 2017

How did you spend your day?

Peter, a good friend of mine, who’s
had PLS (the same sort of Motor Neurone Disease as me) for five or so years
longer than me, not unnaturally gets tired and fed up with it. We try to cheer
each up with jokes and encouraging stories.

Last week he sent me this short
conversation.

Wife: “So, what did you do today?”

Husband: “I changed a light bulb.”

Wife: “And that’s all?”

Husband: “Yes – and I had a drone
film it.”

Then comes a YouTube clip. It’s a
film taken by a drone of an engineer climbing a 1500 foot high communication
tower to replace the light bulb at the top.

It occurred to me that it is quite
a good parable of what life is like with MND. A simple job becomes a massive
task. Some tasks become impossible, despite your skilled support team of
carers, physios, OTs, nurses and doctors. For example, getting to the toilet is
a major and potentially hazardous operation. Eating a meal is hard concentrated
work. Not that I’m looking for sympathy. Like the engineer at the top of his
1500 foot TV mast, a task completed brings great satisfaction, and sometimes a view
can be breathtaking.

This of course is not only true for people with MND. I have friends with ME for whom any exertion comes at great cost. And I'm sure it's also true for those who suffer from depression. Climbing from the black pit is more than they can bear. Surely you deserve a celebratory video when you make what others might regard as a minor achievement, your own "light-bulb moment"! Perhaps we should share them as well.